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6.13.2010

Two days, two specialists...

For a while I have to admit I wondered why Ian and I were "uprooted" from our happy existence in our old town.  Recently I've come to realize that God was at work getting us closer to Duke, long before we even had an inkling of our reason to take advantage of the "world class" doctors there...

In a typical week when we're home we use just over a half tank of gas in the Sienna.  But this week we used two tanks as Darcy and I burned up the highway between here and Duke two days in a row.  Admittedly I wasn't thrilled about the way scheduling worked out, but we'd been waiting for her dermatology consult since the week we got home from China and Dr. F wanted us back on the surgery schedule ASAP.  So two days, two specialists it was.

Wednesday was dermatology.  Dr. B was FANTASTIC!  I have to admit that I had been slightly put off at having to wait three months to get in to see him, but after meeting him I understand why he's got such a waiting list.  He has an amazing "bedside manner" and quickly even had Darcy ~ who is a bit suspicious of anyone approaching her in an exam room ~ at ease.  We had his full attention for over 45 minutes.  He went over how the pulsed dye laser works (Ian could totally explain it to you, I'll have to settle for saying it is really cool...) and gave his thoughts on how he thinks Darcy's port wine stain will react.  He also noticed how both she and I are starting to have our summer tans ~ despite being slathered in SPF 50 when we are outdoors ~ and decided that we'll wait until October to begin treatments.  Then he gave time for us to ask questions and just talk about our feelings on seeking treatment.

I've been a bit on the fence about going through with dermatology since we've been home.  On the one hand I don't even notice her birthmark anymore.  I do think she is beautiful just the way she is.  And I would never want Darcy to think that we felt like we had to "fix her."  But on the other hand I know how cruel kids can be.  I suffered from dreadful acne in high school and I cried so many nights just wishing that I had beautiful skin like some of my friends.  Later when I got to college I finally found a dermatologist who had a medical solution and I remember wishing that my parents had taken me to him years before.  I expressed all this to Dr. B who offered to let me contact some of his teen patients who serve as references.  In the end we decided, for now anyway, that we're going to start treatments and see how they go.  Dr. B's PA gave Darcy a teddy bear and a ring pop and said that by the time we were finished that we'd all feel like family.   (That's because most people need at least 10 to 15 treatments before the stain is "as light as it is going to get," though some get optimal results in three to four visits while others take closer to 100).  Armed with this information we headed out as Darcy offered him a high five and promised to see him soon.

Oh, I nearly forgot though, Dr. B gave us time to ask questions.  After taking care of the big stuff, we asked one more question that has been buzzing around in our house for several weeks now.  And armed with permission, (didn't know how her port wine stain covered ear may react) tonight we went and took care of something Darcy's been wanting.
 Um, yeah, those are Hello Kitty studs ~ AND that is one happy little girl!

Not a single tear, and they did them one at a time.


Thursday was eye.

We are scheduled for surgery again on July 7, but we got some very encouraging news from Dr. F during our exam.  First of all, the pressure has stayed at 23/24 since our last visit a month ago.  That was good news because when the last reading was taken, Darcy had just come off some high steroid eye drops that could have been the reason for the lower pressure in her eye.  (These drops are only for short term use).  But since the number hadn't climbed back up Dr. F thinks the goiniotomy was successful and now wants to go back and do the other half of the surgery.  If it ends up lowering the pressure down to anything below 20, we will be avoiding the valve implant for a little while longer (possibly forever).  So we're going to give it a try.  If it is unsuccessful in bringing the pressure down to below 20, we'll have surgery again in the early fall to do the valve implant. 

The other great news was the result of Darcy's vision test.  Before her first surgery (which relieved some of the warping of the eye), Darcy's vision in her right eye was about 20/400.  Surgery and glasses improved it to around 20/200.  And Dr. F thought that was "as good as we were going to get."  But she wanted to do the patching to make sure Darcy's brain continued to receive signals so vision wouldn't deteriorate.  She didn't expect any improvement.

I guess God had other plans.  In just one month of patching, Darcy's vision in her right eye has improved from 20/200 to better than 20/100! (they think it is around 20/80)  For anyone (like me until we started this "glaucoma journey") who doesn't understand those numbers, a person with 20/200 can be considered legally blind.  This means that the smallest letter than can see standing at 20 feet away from the chart can be seen by a person with normal vision from 200 feet away.  Think stop sign letters.  (Can you imagine how bad 20/400 must be?)  20/80 means that you can read an alarm clock at ten feet and the source I found mentioned that news headlines are typically this size.  What a HUGE difference for my sweet girl.
And to think that we had been told that surgery and glasses would be a one time improvement.  Oh I just love the surprises God throws in!  That boost even gave me a chance to share a bit of my faith with Dr. F.  And that was fun because just the night before the kids added praying to be able to share the love of God with someone to their nighttime prayers. 

So even though I could have grumbled about finding coverage for my older kids (one more blessing, two WONDERFUL friends who happily took them for me during marathon appointments) and driving all the way to Duke two days in a row, we were given reasons to celebrate.  God is good!

21 comments:

Leslie said...

It's so fun to start my day by reading this update. Darcy's earrings looks so cute! I can't wait to see them tonight! You're a wonderful mom, Kristi. We're going to keep praying for darling Darcy.

Valerie and Jeff said...

Such a wonderful update to read through this morning! Your daughter is so sweet. Hope the laser proceedures are successful, but she is already beautiful as you mentioned! Scrolling through your posts, I noticed you asked what Bibles we all liked. My kids (7,5,2) like:

Read and Share: Our Together-Time Bible
by Gwen Ellis
At the end of each Bible lesson/story there are about 4 questions about content of what was read. It really helps them listen up so they are the first to answer. In fact, when we read our other Bibles (we rotate through them) they request us to make up questions for them to answer. That keeps us on our toes too!
MY favorite is :
My Favorite Bible Storybook for Early Readers
ISBN # 140370 286 1
It has the cutest illustrations to go along with the well written stories. It captures my 5 year old's eye for sure!
Hope this helps. Looks like you got many good comments from others.
Blessings,
Valerie

Amy Woods said...

WOW!!! Praise God for that update!!! I love how you can see how God was weaving your life like a tapestry to arrange the most beautiful design! You are blessed, my friend!!

Larry and Carol said...

This is such good news for Darcy. To be so close to Duke and world-class medical treatment is really a blessing - we just never know what steps are leading us where.

Jess and Tim said...

So happy for you and sweet Darcy! I am sure you are ready for a week of 0 appts now! I agree, what a huge blessing to be that close to a major care facility! God sure does know what he is doing!!

Jess

Jess and Tim said...

Oh and her earring are awesome!! What a beautiful smile!!

Tricia said...

Wow! All of that is wonderful news. God is good!!

Ally said...

so great to hear the work that God is doing your lives. He is definitely at work. Thank you for keeping us updated.

Love her new look:) She is just adorable!

Rachelle said...

WOO HOO for improvement! And the ears are super cute!

a Tonggu Momma said...

She has better eye sight than I do now!!!! God is so, so good. And your little gal looks amazing with her earrings.

C.C. said...

WOW!! Such wonderful news on all fronts!! Can you even imagine how Darcy is seeing the world for possibly the very first time?! And the pics of her are breathtaking....wow.

Sharon said...

Such good news! That is great about Darcy's vision. I know what you mean about not noticing her birth mark anymore. I totally do not see Hudson's scars until a child or adult asks about them...and then his speech. I forget how he sounds because it is what we know but it stings a little when someone asks when he will talk better, etc. It is so hard to know what to do and when but I have said it before, you are great parents and perfect for your littles!!! Glad to have checked in...been out of pocket being in MN.

Melissa said...

Oh Kristi - this is such WONDERFUL news! And yes, I am sure you are exhausted from all of the driving and stress of these appts, but God is so good! You will make the right decision, I know it, when it comes to what to do for Darcy. You and Ian are incredible parents, and I personally love learning from you guys! And I LOVE the earrings, so stinking cute! Makes me really want a girl next:)

Dawn said...

Yes, God can and He did! Our little girl adopted from Vietnam had her eyes healed too! God really does work His miracles today for His children. And she is so beautiful now I can understand how you felt about the laser surgery. She will thank you when she is a teen...it will be worth it...

Blessings

Nancy said...

Wow, great appointments! Love the new blog look too!

Glenda said...

Isn't wonderful when God gives us a peak at His side of the tapestry? Praise Him for all the good news! My family also thanks Him for bringing the M family into our lives!

Heather said...

It is amazing to me to see how much she has changed since pics of her in China. Just look at her demeanor which oozes with happiness, confidence, and peace! Ur right, I don't really even notice the port wine stain birth mark (BTW, why in the world did they have to name it port wine "stain"????) But, I do understand your concern of how other kids react. She is one beautiful girl as your other kiddos are as well.

Shonni said...

It is so cool to see how the LORD is healing your little one and will continue to lead you in what is best. She is so adorable by the way.

gracefortoday said...

This is all just awesome news! I will be adding July 7th to my calendar to pray for the surgery and all the details. God is certainly showing off His power... gotta love it! Wish we could be seeing you this year. We will be in Ohio around the 4th for time at the farm. Bless you guys!

Jenny

Our Journey to China said...

I was so excited to read this post! We are rejoicing with you over God's 'surprise blessing!' with Darcy's vision! :0) So glad to see how God is blessing you guys. :0)

Vicki said...

So amazing! But you know who is taking care of all of this so I am not surprised! I love the earrings!
Vicki
http://www.pomafamily.blogspot.com